swollen cerebellum Recovery?? / Guillain-Barré syndrome

[HelenT6781]

Hi

Im sort of looking for support/advice? My little one has baffled all the experts so Im pretty much grasping at straws, but every little bit of info helps!!

my 3 year old daughter was taken in to hospital 2/3 weeks ago now, We first thought it was meningitis, then Encephalitis then Guillain-Barré syndrome however she has many of the symptoms but nothing fits exactly!!

She basically had a sickness, then went really floppy and then had some seizures (the very short version!!)

ALL the scans and tests have been done twice and would show a child in perfect health! However when you SEE her, she clearly is NOT.

She was pretty much paralized but in the 2 weeks she has now moved on to rolling around and grabbing with hands (although its wobbly!!)

sitting/ standing and head holding are still missing. The only thing the doctors CAN find is a swollen cerebellum, Has any one every HAD a swollen C.bellum?? is it possible that she might make a full recovery? and if so how long did it take? I know there is no exact answer but any help or stories of this would be greatful!

As we dont have an official illness there isnt even a support group I can go to :-(

The doctors at Great Ormand Street in London came up with "its a funny virus thats attacked the brain" !

[prairiemary]

I had a severe case of Guillain-Barre many years ago. Did they do a spinal tap on her, to determine if there was a high percentage of protein in the spinal fluid? Just by reading what is going on with her, it would not seam that she has G.B.S, but another neurological issue. I hope you find support right here, since like my G.B. S., there is not a seperate support group. Please get another opinion, from another doctor, being told that it is a "funny virus that attacks the brain" is NOT good enough! Find another doctor, one with some empathy.

[glenntaj]

--meaning that her cerebellum cannot coordinate her movements precisely, at least one possibility to investigate is celiac/gluten intolerance. There is an entity known as gluten ataxia:

https://sites.google.com/site/jccglu...e/glutenataxia

In fact, Looking through the entire Gluten File (put together by Neurotalk stalwart jcc and famous throughout the on-line world) might be a good idea:

https://sites.google.com/site/jccglutenfree/

[*Abigail]

It does not sound like GBS. Only say this based on personal experience.